Diet and NF2

[Dealy]

Steve- I am an NF2 from the State Of Kansas. My first one manifested itself at Age 38 and the 2nd one at the age of 55. I cannot even imagine dealing with this at the age of 17 so my heart goes out to you and your son. My first AN I had surgery leaving me deaf-the 2nd one I had radiation. I still have hearing but it is down to 29% in my only hearing ear. Without a hearing aid-I hear absolutely nothing. I wish their was something I could say to you and your son to make things better. However- I for one have accepted this and take it day for day and glad I am still alive although with a profound handicap. (Hearing). Keep us updated if you would like-sometimes just hearing from people who understand is medicine for the mind in itself- I know it was for me. Take Care My friend-and God Bless. Ron

[Steve1100]

Hello Ron,

Thank you for your note. As you know there isn't anything that anyone can say, as sometimes there just aren't the words; this is one of those situations.

I am sorry to hear about what happened to you, this is a terrible thing to have to deal with at any age.

For my son, we have hope that science will win the race against nature and that the smaller tumour will not grow for a while.

Take care of yourself Ron, it was good to hear from you.

Very best wishes

Steve

[hgtvqueen]

Hi Steve,

I'm sorry to hear of your son's diagnosis.  I know what you're going through.  My daughter was diagnosed at age 13 - when we discovered her spinal cord tumors, which were successfully removed.  NF2 was confirmed as she also had bi-lateral acoustic neuroma.  You are doing exactly the right thing by researching everything you can find about NF 2.  I cannot emphasize enough how important it is to take your son's medical care into your own hands. If I had listened to the first neurosurgeon we went to, my daughter would be completely deaf now - he didn't want to operate until her hearing was gone!   Through this website, I learned of the House Ear Institute in LA.  I obtained copies of my daughter's MRI's and sent them along with a letter to the doctors at House.  Within a few days, Dr. Friedman called me personally and told me what he could do to help.  Long story short, within 6 months of that conversation, he successfully removed the smaller of her tumors - about 2 cm- without damage to her hearing or facial nerve.  She's doing great. She is 17 now, and we are "waiting and watching" the remaining tumor. 

Please don't let any obstacle prevent you from at least contacting House Clinic. It is THE BEST PLACE IN THE WORLD to get treatment for NF 2 tumors.   I was worried because we live in Texas and House is located in LA - not exactly a day trip for us.    It's worked out fine - we get our MRI's done locally and send the films to Dr. Friedman for evaluation.  My prayers are with your family.